Things you wish you'd known when you first got post-concussion syndrome.
 

Please use this thread to post advice for new members along the lines of "if only I'd known that when I first got post-concussion syndrome".

Most of us are probably struggling with our symptoms trying to cope with our situation and find the best treatment. It is a learning process that unfortunately takes a while, but we do learn things along the way, things that would have helped us had we known them at the beginning.

Here is your chance to pass on what you have learned to any new people to this forum, who will doubtless be hoping that someone has some guidance for them in dealing with this horrible condition.

Perhaps this thread might help others not to waste time and energy before finding something that helps them.

Everyone is different and in different situations but, if enough people share their experiences of what they have learned, perhaps new readers will be able to pick out something that will work for them.

CS

Hi CS,

what a terrific idea you have here. I'm happy to add some thoughts.

1. get to a neurologist if you haven't already. you might need PT or other treatments, don't be afraid to ask questions and if you are able bring someone with you who can push back on the doctor if you feel like you're not getting answers.

2. if you suffer from over stimulation wear sunglasses and ear plugs. This tip was shared with me here and made a world of difference.

Also, I've been struggling a lot with noise sensitivity and over stim even at home. Noises like lawnmowers, weed whackers (have no idea why a lawn in seattle needs to be mowed in Dec), big trucks, esp. garbage trucks (Ugh - the worst) all cause me a lot of trouble.

Yesterday my husband came home with a set of noise canceling headphones for me. Wow is all i can say. I think there are some really pricey ones made by bose but i didn't get those. I'm not sure how much he spent, all i can say is so far its worth it. I feel protected the same way i do with sunglasses on and it takes the ear plugs to a whole new level. I wore them all day today.

hope these are helpful to anyone out there.

I'll add be very cautious in everyday movement.

I've racked up a string of very painful injuries over the past four months to my knee, eye, forarm, pinkie, thumb, back, and now- neck.

Some have healed completely (thank God), nd other have a residue of stiffness. Plenty of rest, low stress, etc.

I've had little contact w/doctors due to insurance/financial situation, but hope you can do it.

I take exception to Marilee's recommendation of getting to a neurologist. While this may sound like the logical thing to do, Marilee was very fortunate to find a neurologist who has some level of understanding of Post Concussion Syndrome.

I have been seen by many neurologists. Only 2 out of at least 12 or 15 had a decent understanding of concussion. The wrong neurologist can start a medical record that can follow your quest for help and get in the way of future help. The riskiest neurologist in my opinion, is the one who works in a large multi-specialty group practice or HMO.

I am talking of the clinics of group that share access to medical records. If the family practice and ob/gyn and neurologist, etc. all have access to your complete records, the wrong label or diagnosis can block you access to further care.

In my case, one doctor diagnosed my as somatoform disorder. This can mean three different things. His symptoms are unexplainable, his symptoms are likely made up (psycho-somatic or hypochondriac) or we recognize his symptoms but can not reach a definitive diagnosis. The first two can leave you in limbo land or worse. The last can hopefully leave a chance at further diagnostic work.

After one doctor in my HMO diagnosed me as somatoform, my access to further help shut down. I spent my own money to get further diagnostic work but even then, my health care company (HMO) refused to even consider my private doctor's diagnosis.

So, if your are going to see a neurologist, get a referral to a neuro who has a true understanding of concussion. This will be a difficult but important task. If litigation is involved, do not do this wiithout the advice of your attorney.

My recommendation for early on is to learn to recognize your symptoms. The TBI Guide is a good startat helping you understand them. Telling a doctor that you don't feel right or feel dizzy or confused is too subjective. If you can better define the specific symptoms (but not in medical terms), the doctors can put a better picture together. Using medical terms creates a risk of being rejected by doctors who do not like patients doing self-diagnosis. The modern term for this is cyber-chondriac.

Instead, say:

I get stuck trying to find a simple word. I might know what I want to say but can't get the word to my lips. This has never happened to me before as often as it happens now.

The bright lights overwhelm me.

The voice of multiple people talking at the same time causes me to become disoriented.

If I try to watch TV, I can not pick out the dialogue from the common noises in the house like the heater fan, etc.

Try to define any specific situations where your symptoms get worse. Morning, at the mall, after trying to read, etc.

It also helps if you can bring a family member with you to explain what they observe. They can also take notes for later reference.

And, DO NOT SOUND LIKE YOU ARE WHINING or grumbling. A journal can help take the whine out of your presentation of symptoms to the doctor.

Things I wish I'd known as caregiver
 

Excellent idea Concussed Scientist! I can give some perspectives from a caregiver's point of view.

1) Treat a brain injury at least as gently as you would a torn ACL. It's scary watching someone you love struggle to do simple things and as a caregiver you want it to get better immediately. You wouldn't be surprised if a knee with a torn ACL buckled if walked on too soon, so give your person a break and give them time and space to heal.

2) Rest in the dark and quiet. Restrict your person's exposure to noise and light and things that require concentration (TV, texting, crowds, excited conversation, etc.). Entertainment should be limited to low stress, chatty, mostly one-sided conversations. For example, I would shut all the curtains, turn off radios and TVs, and talk with my daughter about something as trivial as our dog's activities for the day. This of course required some serious creativity on my part but it was soothing and undemanding for her.

3) Learn something about reflexology and/or accupressure. Gail Denton's "Brainlash" is a fantastic resource for this. These activities not only give your person some non-prescription relief from symptoms, but they make you feel like you're DOING something to help. There is nothing worse than standing there helpless as someone you love endures agonizing pain.

4) Keep a journal for your loved one. Resist the temptation to ask "how are you" 50 times a day. Just keep track of simple things like whether or not they are still cringing when someone empties the dishwasher, or how quickly or slowly they go up stairs, or the status of their sense of humor, or whether or not they show memory from yesterday or last week. These little indicators can really help you start finding patterns that exacerbate or alleviate symptoms.

5) No offense to anyone here, but one big rule of thumb is not to completely trust the brain injured person for information about themselves. Sometimes my daughter would say, "I had a great day, I feel good." Then the next day she would say, "Oh yeah, I went to the nurse's office with a headache twice yesterday it was awful." Or when she told the neuro, "I'm having two or three headaches a day," only to say at the next appointment, "I'm down to having two or three headaches a day, before I had a constant headache most days." She was seeing double for most of the year but didn't really realize it.
It takes a lot of energy for the injured person to describe how they are feeling in a way that the caregiver can understand. They simply don’t have the energy, or feel so bad, that they don’t provide the information you might need to help them make decisions. You must learn to observe. Those scary, glassy-eyed stares should be read as neon signs saying, “closed for business…temporarily shut down”. It’s tempting to try to get the person to re-engage, talk, whatever when that happens but that’s when they really need to rest.


6) You MUST advocate for your person. Research any symptoms that might respond to some kind of treatment (i.e. ambient vision, hormone/adrenal/thyroid issues, vestibular problems). It's up to you to research and find the right docs to help. You must also help them navigate through school or work or household responsibilities and especially help with personal relationships to reduce stress. Help them make decisions so that they don’t hurt themselves again (i.e. sledding is a bad idea right now, wear shoes with traction, eat your protein, etc.).

I'm sure there are about a million other things for caregivers to know. These are the biggest things I wish someone could have told me when we first started this journey.

One final note, it does get better. It sometimes takes a very long time, and your loved one may always have a lower threshold for headaches or other symptoms, but there is reason to hope. Doctors start saying: "It can take 3 months," then, "it will take at least 6 months," then they start talking in terms of a year or more, it is very scary and very frustrating.

I was obsessed with timeframes at the beginning. Here’s a little synopsis from what I've experienced and heard from other moms:

First 3 months are, frankly, terrifying as the cascade of cell death evens out and you start realizing that this is serious and it isn't going to go away in three weeks. We are used to people experiencing improvements from one day to the next following a serious injury. Brain injuries do not follow this pattern. There may be several good days followed by several bad. It’s unpredictable. Steep learning curve for caregivers and loved ones.
3-6 months: Things sort of maintain in a fairly terrible state. Lots of symptoms but you aren't as alarmed by them now and you're learning coping techniques. Hopefully by now you’ve seen a good doctor who can explain when you should go to the emergency room and when you should just be patient and what else you need to do.

6 months: Lots of people notice huge improvements in pain and cognitive symptoms around this point. Fatigue and feeling easily overwhelmed seem to be main culprits.

By one year most people seem to have chased down therapies for any treatable injuries and seem to have pinpointed triggers and "work arounds". At one year my daughter had very subtle issues. Now, at 15 months, she answered someone that she was a 9 out of a 10 when compared to before. That's a beautiful thing, isn't it?

This is an appropriate time for me to sign off the boards. I will probably be back to check in, but it's healthier for ME to move on to other things. I hope I have offered even one person a little help over the months. Thank you all for your support and suggestions. All the best to each and every one of you.

Things you wish you'd known when you first got post-concussion syndrome.

That every concussion is different, where some people get better at 6 months, some people never get better. I thought all concussions were the same and all treatments work on everyone, but I am an example that they aren't. Now I know it, and though I am still in denial (and always will be), I am living with it.

yep, Mark you are completely correct. I was very fortunate, much more so than most, to be referred to a neurologist on the first try who at least knows what i'm dealing with. I also take for granted being in a good sized city where there are several choices. I'm glad that you edited my suggestion there.

There are so many helpful sections in the TBI guide, one in particular was about how to prepare for dr. visits. This has helped me to get what i need out of the appointments.

Wow- informative post by PCSLearner. Thanks for that.

1. It is natural to fear the unknown if you don't know what exactly is happening. Trust your body to be able to heal itself over time, however long that might be.

2. One time I sat outside in the grass for 1-2 hours and just spaced out. My brain felt less stressed afterwards. For me it helped to have these "spacing out" sessions. Too bad it's wintertime and too cold outside.




Mark - great post. I think it is important that the wrong diagnosis by the neurologist doesn't obstruct opportunities to receive new help. I just wish I read that earlier, like 2 weeks ago.

I would first say welcome to the forum. Read some of the posts in the hope that they help with your particular situation as each injury is distinct but you may have some similarities. You are not crazy and you are not alone.

For me, I spent the first few months in denial and trying to push through the injury. Pushing though is not an option: I found that out the hard way. It took me over six months to come to the conclusion that I had a severe injury.

For me, getting associated with a good medical team (neurologist, TBI specialist, and TBI rehab team) has helped. Beware of all docs as they are all not the same and you may need help finding someone with experience in TBI/PCS. I live near a major city and am lucky to have one of the nation's best hopsital systems available to me. Searching out the specialists and working with the insurance companies is very exhausting. Unfortunately it is something that must be done. Hopefully, you have a partner to help you with this process. Ask for help in this process.

The insurance process ..... wow what do I say besides roadblocks that can create overload. I still experience overload from talking to my insurance companies (IC). You must remember that IC are businesses seeking profits. Your medical expenses hurt their profits so IC will do things to protect their profits. IC make the process difficult so you will give up. Never take a denial of benefits without asking for an explanation.

The emotions are hard to handle. Read the TBI Guide as emotion is part of the process. I have done my share of crying and expect more to come in the future. Now, every day, I thank God I am alive and try to cope with this new life. Humour helps. Familiy and friends help. This forum helps.

Great Idea!!!
 

This is an awesome idea!!!!!

1) Realize that your doc probably doesn't know anything about concussions.

2) There really is not much to do for your problems

3) DO NOT GET A 2ND CONCUSSION

4) Treat your symptoms
If you are dizzy walk slowly and wear good shoes
If you have trouble with light wear sun-glasses
If you have trouble with noise try having some white noise to help

5) Have a daily journal of your symptoms throughout the day

6) Realize that people don't know how you feel, even when you tell them

7) You may be lucky and heal quickly, but it may take years

8) Research online there is a plethora of info

9) Realize that it you can learn to live with this...You are OK

10) You may have to stop doing sports (dancing), go to the gym instead

11) Pray, pray, pray!

12) Stress kills! Keep your neck loose not tight--best advice I got from a doc!

Finally just realize that you will be fine!
Don't hit your head again or it will get worse for a lot longer, but even then it will go away or you will learn to cope and live with it.
It can make you either a better or a worse person...your choice.
Sure it stinks, but as long as you have had a CT and MRI to prove that there is no bleeding or breakage then you won't die and you can become stronger from it.
Offer your time to others. This condition can cause you to become very self-absorbed, giving your time to others or even better giving your time to others worse off than you helps with the selfishness.

Good luck....I know it is a daily struggle. I am on month 23...It is still constant headaches, light and sound sensitivity, dizziness sometimes, nausea daily, trouble with concentration, worsening with activity, and constant fatigue. I got this from falling off a horse my freshman year of college, got 6 minor concussions afterwards from silly things within a year of the first. But I am in my junior year of college and plan to go to graduate school.

This has helped me to realize others' pain when they are suffering, it has made me want to go into nursing, it has helped me to learn how to manage my time better, and how to rely more on myself.

It is your choice.

Good Luck,
Margarite

1. It may be a very long road to recovery, if ever - don't put a time limit on recovery. Really depends on the concussion. This is what I found most difficult. But with time, generally you will get better.

2. Reframe your situation and give yourself time to accept your circumstances. I'm 20 months, still not fully healed. I deal with it daily. I may never fully recover. Flipside is I could be dead or a parapalygic (sp?) or something a million times worse. Whatever you are going through it could be worse.

3. Limit risky activities. For me this is near impossible but I have reduced the risk of head injury. i.e. No Hockey.

4. Generally it will get better with time - just don't look at things day to day or even week to week. For a serious concussion month to month or every 6 months is more realistic. Then you'll probably see progress.

5. PCS can be a blessing. Trials and tribulations build character and can make you a better person. Relate your story to others - you can help out someone else.

6. This is just my opinion - doctors have no clue about concussions (hey my dad's a doctor so I don't say this lightly). They just don't. Time is what will make you better. I doubt you'll get answers through Neurologists.

7. For me doing things I love helps. Gotta stay positive.

My short story - head injury snowboarding. Knocked out cold for a minute or so. Memory loss. Probably was my 5th concussion since I was a kid.

I'm an exec and only missed 1 week of work (not saying that's for everyone but I think it saved me from potential for depression).

Month 1 to 3 - poor vision, couldn't walk around the block, always nauseated, headaches, dizziness, light headedness.

Month 4 to 12 - basically the same thing but gradually could get some excercise at the gym. Couldn't bend down to tee up a golf ball. Couldn't wash my car, mow my lawn or rough house with my kids.

Month 13 - eyesight finally corrected itself after seeing a zillion doctors. Yeah!

Month 20 - today. I Golf and do many things I've put off. Surfed in Maui last month (I know it is risky but very small waves...) Headaches still and most days, nausea sometimes but much better, dizziness sometimes. Can't pinpoint anything triggering how I feel. Although I do know stress doesn't help.

Tried Naturopath, accupuncture, seeing other specialists - nothing worked for me other than time. Never took any drugs and don't plan to.

One day maybe I'll be 100% better. Till then I'm coping with a different me - but long term I'll be better for it. No hockey though :(

Don't dwell in self pity.......your situation, whatever it is could be worse. As I write this I feel like crap.

Out.

things I wished I'd known first time around!
 

Get Gail Denton's book Brainlash early on and keep referring to it.

Journal good days and bad, that way you can see overall improvement over weeks and months.

See a behavioural optometrist if you have vision/balance/dizziness problems.

Try alternative therapies to see what helps, including acupuncture, cranial osteopathy, massage, etc

Talk to people about how you feel, even if they don't understand. They may not understand your injury but they do understand statements like I'm in pain, I'm lonely, I'm scared. Tell them what you need from them, they won't know what to do otherwise.

Rest, rest, rest, rest. The brain heals quickest when it is allowed to rest........if your symptoms worsen, it may be a sign that you are doing too much and need to pull back.

Do NOT believe the doctors who tell you that you will not recover any further after a year. This is utter rubbish in my experience. I was mostly recovered after a year, but I continued to get better and better as the years went on.

DO NOT GIVE UP!

xxxx

Its not forever
 

I feel a bit odd when replying to things like this because I wonder if I'm actually talking about the same thing as everyone else because altho I have been diagnosed sort of with PCS, I'm not totally sure its the correct diagnosis.

These are my probs (posted in 2008):

hi dont really do this sorta thing but, as title says, i wan2 kno if any1 has the same symptoms as me. 11yrs ago (i was 9 at the time) i was in a car crash, it wasn't serious but i got the usual injuries (whiplash, bruising etc). i noticed immediately that i was v aware of the fact that my mum n bro were sniffing (coz they were cryin, obv) n the noise upset me and made me angry. ova the past 11 yrs the problem has worsened and worsened - noises that upset/anger me are clickin, sniffin, swallowin, tappin, basically alot of diff noises, mainly caused by ppl. i have no idea y the noises upset/ anger me n i feel like a freak n the fact that i have this prob really really upsets me. the anger/upset causes me 2 hit myself (head, arm, leg), dig my nails into myself, bite myself, basically anythin 2 relieve the frustration. n the fact that i do this 2 myself also upsets me!! i have recently been diagnosed with Post Concussion Syndrome (after having about 20 docs ova the yrs not have a clue wot was wrong!!) since the crash i have seen numerous counsellors (nothin worked) n i'm now on medication, tho that ent workin eitha. i would really like 2 kno of a 'miracle cure' (kno thats not v likely!!) coz it has ruined my life and my childhood. if anyone has experienced the same things/similar things plz tell me if anythin worked.
thanx 4 takin the time 2 read this (jus realised there's quite a bit lol!!)

I don't know whether or not other people have similar issues but I'll say what I think anyway.

Firstly I'd suggest not to dwell on the problem (if its similar to the kinds of things I have). Believe me I know how hard it is not to but seeing as I'm in my 13th year of having these issues, it is so damn hard to try to change something that has almost become a habit. Being 9 years old at the time of the crash didn't help because its hard to understand exactly what the hell is going on in your head when suddenly you have feelings that make you feel horrible inside and you don't know why.

But I would say that from the outset, you HAVE to have a positive outlook (I didn't have this because I didn't know what the hell was happening and how long I'd have it for). Without the positive outlook and thoughts, it consumes you and it takes over until its ingrained into you. You need to realise that you are stronger than this thing and you can overcome it. And its not something that is definite and forever, something caused it to happen so it can be undone. At the same time you do need to be aware that it wont be easy and that if there are things that get in your way you need to be strong enough to get through them, which I believe that everyone, if they convince themselves enough, can be.

Don't take any crap off doctors, who aren't qualified in this area, trying to fob you off just because in actual fact they dont know what they're talking about either. See a neuropsychologist or some sort of 'brain doctor' who is qualified in that area and keep pushing until you get satisfactory answers.

If you are the parent, You can do the whole positive thing and reassure your child that its not forever and it will be overcome. My parents have been totally fantastic throughout the whole process, even tho I haven't been the easiest of subjects to deal with but they have none the less. Get your child to talk about how they're feeling so that they don't bottle things up. You go through every single emotion going and thats a lot of stuff to keep inside. Give your child ways of dealing with the emotions BEFORE they find ways themselves, such as self-harm. I mean it never even occurred to me that I was self-harming until my dad suggested it was.

I realise all the things I'm saying may be idealistic and in practice putting these things into play, espec with a child is gonna be really hard, but in my opinion it will be worth it because hopefully it will make the process smoother and more importantly shorter.

Most importantly, don't let it become part of your life you've just accepted.

Totally agree about the insurance companies. I had so much trouble with mine, got settlement in the end but they may as well have just kicked me straight it the face it was that pointless! I'm not saying that everyone will have the same experience I had but with brain injuries, insurance companies just dont accept liability without definitive proof, which is impossible in my opinion. I'm not saying everyone should not bother claiming but if it goes on for 13yrs like mine did, it does nothing to aid recovery because of all the extra stress involved and it just keeps the problem going longer. Just keep track of how its making you feel and judge for yourself if claiming is really worth it because there is nothing worse than putting so much effort and emotional energy into something that doesn't turn out quite how you were hoping.

Post Concussion Syndrome
 

It is very encouraging to realize that the experience I am having is in fact not unique to me and that there are many others who have similar testimonies to mine.

It is seven weeks since my injury at indoor soccer. Flying head first into the wooden surround wall having gone straight up and over the goalkeeper was not my purpose but such can be the nature of the beautiful game.

At first I did not realize how bad my injury was, although I was out for a few brief seconds I did not think much of it until I began to be seriously dizzy and foggy in mind. It took over a week for the injury to really kick in and left me light-headed and faint.

As a pastor, and preacher, I have never experienced anything quite like this in 19 years of ministry. It has truly been a humbling and profitable experience if not a little scary too.

I have experienced anxiety in ways I never knew existed. I have been fatigued at a level that is abnormal, and my toleration for light and noise has been reduced.

Thankfully the issues mentioned above have eased although I have relapsed with more intense dizziness, mild nausea and mild anxiousness over these past few days, mainly I think because I returned to exercise and exertion on the soccer field. I am determined to remain wise in how to handle this but also desire to face it and not allow it to define me. This is a very interesting challenge for someone who has been blessed with good health all of my life and who now is learning things about illness at a deeper level.

I am very thankful for the testimonies on this forum and desire to encourage whoever I can in our mutual battle with what is a reality and not an imaginary condition.

I do believe that we are fearfully and wonderfully made by our creator and in many ways finely tuned. Head trauma affects that fine tuning and the connection between our brain and soul (the seat of our affections and thoughts and will) is not fully understood by any of us, secular or religious. I am convinced that it is designed to humble us and realize that we cannot live this life in just in our own strength and that we need the mercy and grace of one who is bigger than ourselves. I am confident that in spite of what I am afflicted with in this experience God's grace is sufficient to see me through. I trust if you have not discovered that yet, you will.

Go easy on yourself. A concussion/head injury is a life changing moment. It takes a while to realize that this is the "new" you - a somewhat slower, stupider, more agitated you (also in chronic pain if you get the headache too). I went from riding my bike everywhere in the city and going out with friends to staying in all day confused. Everything takes time. Time time time!

Robert,

The love of soccer you received in your homeland not withstanding, I hope you are taking precautions on the soccer field. Absolutely NO heading the ball. God gave you feet to use on the ball. After your concussion, your brain will be much more sensitive to impacts or even simple jolts.

The goalie box during a corner kick is also a very dangerous location for those who have a history of concussion. Too much contact.

The way of a fool is right in his own eyes, But a wise man is he who listens to counsel. Prov 12:15 NASB

Many of us have experienced the sensitivity to minor impacts after that first concussion.

Hope you are doing better. I have not been able to tolerate the auditorium acoustics at my church. Instead, I serve the under 2 crowd.

My best to you.

I wish I had understood that recovery REALLY is two steps forward one step back....after a month of symptoms easing and starting to like feel myself again suddenly out of the blue it's all back again....

Long story how, but I found several ways to accellerate the healing of many injuries I have had and that includes brain damage, and even heals these injuries , including my brain damage, significantly, ten years after healing had stopped compltely.

One is to merely place your hand in the most common fetal hand position, by placing your hand up near your chin, or clavicle, it doesnt matter wherre your elbow is, whatever is most comfortabe. One hand, right or left, is sufficient. This fetal hand position has evolved obviously in the fetus into an immediate trigger for enormous healing acceleration and immune stimuation. It resurected my badly damaged vocal cords and the same effect on my long dormant brain damage, and other wonders. It cures a cold in about an hour or two in a number of people who have tried iti and myself.

Hold the hand reasonably still and hold nothinig in your hand . You can rest your elvow on anything and can stand or sit or even walk around in that position, or if lying down you dont want your whoe palm to be touching your chest so curl your fingers so the backs of them and the heal of your palm are the parts of your hand that touches your chest and rest your hand on your upper chest, however is most comfortable. You can sleep that way and it will also heal things in your sleep although perhaps not as fast when asleep, and greatly improve all aspects of sleep.

The second which is even a bit stronger and is the ideal for healing brain damage, although both work wonderfully, is to stare at tv snow or static found only on older , non digital, analogue tv sets, now that snow is blocked on new tv sets, turn the sound all the way off. That puts me and I believe all people in a dead ringer for the theta brainwave state, which is again found in the womb, which has also evolved as a tigger for fetal enhancement pf functioning and healing and immune stimulation and that gene is in all of us I believe. Both methods have had 4 million yeas to evolve in the powerrhouse both are now. Others have tried the hand technique successfully on many problems.

To be successful it is imperative you not be too near man made electronics when they are on, comuters and monitors and modems, cell phones, flat screened tv sets which I find radiate up to seventeen feet to the degree of affecting these two theraies, modern radios , some cars computer chips, and hopefully the electric power line running on the street is the normal distance away and not right just a few feet outside your window. One othe insumountable problem now is your neighbor, if in apartment, if he has his flat screened tv set on within seventeen feet or less of you , the radiation will go through the wall and also totally prevent these two methods from working because of that radiation's effect on you I have found. Same with the other sources I mentioned. ALso smoking make this not work, and immune suppressants diminish it, like antianxiety meds, muscle relaxants, pain killers like the synthetic opiates, poppy seeds are 3 are some I warn against.

I want to stress just how powerful the enhancement to healing is using either of these methods, you wont have to guess, it is so quick and obvious.

So thats about it. Hope that helps someone.

Steve Lord

Take brain injury very seriously and be patient
 

Someone with postconcussion symptoms needs to be very careful with their condition and take resting and getting better seriously. They have to be patient and not risk making things worse by returning to normal activities too quickly.

The brain is a delicate and mysterious organ that recovers slowly. If your brain has been hurt and you feel exhausted, then you just have to rest and that's an end to it. You might not notice an improvement every day, but you still have to go on resting and trying to recover.

The trouble is that people do not realize how serious a blow to the head can be. It could alter the rest of your life dramatically for the worse, or you could recover. So, the most important thing is to give yourself every chance of recovery, whatever that takes.

I didn't realize what a serious injury I had. I didn't even go to hospital at first. Now it is four years to the day since my injury and I am still trying to recover. I am taking the injury seriously now.

That is the first thing that I would have done differently. I would have gone directly to the emergency department. It is doubtful whether I would have gotten any treatment that would have made a difference, but it might have, and that possibility would have been worth the effort. I think that giving oxygen in those early stages might help. It is certainly worth a try.

It is really worth making every effort to try to influence the outcome in a positive way. Any small difference that can be made will last a lifetime.

Concussed Scientist

omg 4 years...what are your current symptoms? How much are you able to do?? What percent would you say you are at in relation to be completely healed?

Thanks for the concern, but I won't reply at length in order to keep the thread mainly for advice for newer members from those of us who have had the condition longer. Briefly, I mainly have headaches, malaise and fatigue, but very much milder than previously, and I can now do part-time work. (I would be happy to give further information but email might be better.)

This is a great topic, and an easy question for me.

I wish 35 years ago someone had told me that a brain injury could change my personality. I could have started addressing extreme anger issues. Now it is too late and I have legal problems.

I was blessed in that I was evaluated at Mary Free Bed in Michigan within the first few months and my neuropsych is one of the top pcs drs.

My family hired (paid for by insurance) an evening caregiver/coach for me. I would spend about 4-6 hours a day at Mary Free Bed in PT/OT/Speech/Psych with another two hours of driving. They hired a driver who would stay at the hospital with me (also paid for by insurance) who was a cheerleader for me.

My evening caregiver/coach would help me organize and prioritize my evening activities. She was good at evaluating my functioning level and making suggestions. MFB had me doing several hours of homework a night, everything from neck stretches (my favorite) and dizziness exercises (my worst) to speech practice where she would hold up flashcards with animals or objects and I would have to say what it was.

(I remember elephant was very hard for me. I would always call it a gray, big, round, ears, circus, elephant ears, elephant. I went through that list everytime for several months to say elephant.)

Getting a key person who can effectively evaluate a functual level and coach activities is important.

Another problem for me was, and still is, memory and putting things in time context. I would say things like "no one has even called me for a week" (actually it never came out that clear with my speech problems) and my coach would remind me that I had two visitors and one phone friend call already that day. Taking a blank calandar and documenting all visits and phone calls by just marking the person's name and a V or C for visit or call is a helpful way to remember contacts with people.

Terminated due to PCS?
 

Hello,
I am newly diagnosed with Post-Concussive Syndrome stemming from a MVA on 9/27/11. For a couple of months it seemed my main symptom was having an extremely hard time getting out of bed at my usual time in the morning. As time went one, I had infrequent (since 9/27 about once every 2-3 weeks lasting 15-30 minutes) periods of impaired conscious or a brief loss of consciousness. It never affected my work performance except during those 15-30 minutes once or twice a month. I was put on forced medical leave my my employer where I gathered all necessary documentation regarding my diagnosis and the symptoms surrounding it and what to expect. Before and after receiving doctor documentation, they have regarded my brief losses of consciousness as a "Behavioral Workplace Issue" citing I was "sleeping at my desk." This last episode on 12/14/2011 I was terminated for "lack of alertness" during work hours. They would not allow me to make a rebuttal on my memos or "write-ups" nor did they change their tune after getting multiple doctors sending in documentation citing specific diagnosis' and what my employer could expect from these syndromes. It almost seems equivalent of firing a patient with documented epilepsy who has a seizure at work and was unable to fulfill their job requirements during the periods of the seizures, which was the only time I was unable to fulfill my job requirements. The rest of the time, I was an overachieving employee going over ever goal they set for me and receiving a specific certification that same day I was terminated which I studied for while on forced medical leave and under extreme stress due to them having me run around town getting multiple doctor's documentations because each one I got wasn't good enough even though it was exactly what they asked for. Is this legal? It doesn't seen like it would be.

Make sure to take precautions about keeping your immune system in check.
My body has expended so much energy into helping my brain recover that in just a couple of months I've had four nasty colds, stomach flu, and just general malaise.

Sick as I type this...again. So, I'm drinking more juice for the vitamin c, eating better (healthier) foods, limiting my exposure to people who are ill-which I have been doing anyway. I have a bro-in-law with multiple myeloma who is getting ready for a stem cell transplant. Re-evaluating my supplements and vitamins and trying my very very best to get sleep at night, which is difficult at best.

A little help regarding getting sick
 

HI:
I'm the mom of a 14yr old teenage boy who has been recovering from PCS for 1 1/2 yrs. As a MTBI Literate Integrative Health & Nutrition Coach as well - I can share with you that what you choose to eat can profoundly impact your brain and body's ability to heal.

We are fortunate to have Dr. Diane Stoler as our Neuropsychologist (she wrote the great book "Coping with Mild Traumatic Brain Injury") and she puts all of her TBI clients on a particular diet.

Yes, the body uses an amazing amount of energy keeping it together as you are trying to heal. Good quality protein is very important for your brain and - you might not want to hear it - but eating sugar can reduce your immune system's ability to fight infection by up to 75%. Vitamin C and glucose are chemically constructed the same and will compete to get into a cell in your body. (google sugar and the immune system and you may be very surprised)
The sugar in the juice that you are taking could be counteracting the good that you are trying to achieve. Better to take a vitamin C supplement.
Also, my son takes 3mg of Melatonin and magnesium to help naturally with sleep at night.
Hope this info helps.

Warmly,
Tina Sullivan
Nourish Your Noggin

1. Don't waste time with a regular doctor who doesn't understand concussions or pcs

2. Never push through the pain. When you are feeling the heaches. Fatigue etc. The best thing I should have done is not try to push through school and work and take time off to just recoop. In the end the overstimulation sets your brain recovery back farther.

The Dr.'s kept telling me I'd be all better within a few hours or a couple of days, then it turned into a week or two, then three to four weeks after that. It's been more than 18 months now. I am still improving, but it can take a LOOOOOOONG time to heal and the Dr.'s have no way of knowing whatsoever how long it's going to take, or whether you'll ever recover to a point that's acceptable to you.

But I believed them! I really thought I was going to be all better and I spent all my savings while I was on vacation and then I couldn't work for a year! I wish I had not gone on vacation (even though it had been planned for months) and just stayed home and saved my money.

Try not to go shopping at all... for some reason, especially for the first year or so, I wanted to purchase everything that attracted my eye, it didn't matter whether it was practical or not. If I was in charge of groceries one week I'd buy twice as many things as we needed which was a really bad idea for many reasons.

I wish I didn't...
 

1) Not listen to my doctor and think I could go back to work earlier
2) Lifting weights at the gym after a few days from being released at the hospital!

I was injured at work at the end of November, 2011. I have found this thread very useful – especially the points on getting the right kind of doctors to begin with. I would have never thought of that on my own.

I want to add two points.

1. A friend had me start a daily journal right from the beginning. I write down what symptoms are notable for the day, especially with glitches in memory and with speech. I write down the highlights of each doctor’s visit including what medication I am taking at what dosage and what they say is next.

I have a treating physician and a neurologist and they both get copies at each visit. They both genuinely appreciate it because hey have something they can point to concretely to show what progress there is and what progress there is to be made. In the absence of a positive CT or MRI, a journal helps them explain why I still need to be under their care and why am not yet cleared to drive or go to work. They have in writing and in front of them during the visit what the other doctor is doing. I thank my friend for getting me started this way.


2. I take a friend with me to every doctor’s visit. (Not necessarily the same friend each time)

I may think I am fine when I am with the doctor. By the time I have gotten to the car, I have forgotten the important facts from the visit. I find that my judgment of what is important isn’t necessarily the same as the judgment of a friend without a brain injury. My friend also can help express to the doctor some of the challenges I face, especially when I am not communicating clearly in the visit.

* I really wish that I would have discovered something like this forum from the beginning, but then again, I didn't have the short term memory for it.

* That my parents had somehow known to take away my phone and computer to an extent, or at least monitor what I was doing better. I had short-term memory loss for months. I had a phone scam occur, and did a lot that I do not remember at all.

* That I had had the right doctor from the beginning, but that's not always the easiest thing to figure out.

* To know that it could possibly take years to recover and that it could be permanent. The many false promises of "only 3 more months" killed me, and I feel like I wasted time. I could have been coping instead of being in waiting all the time for it to just disappear.

* Talk to your loved ones or people you are close with about how you're really feeling. Get it out. If not verbally, than email them or something.

I felt like I was talking about it all these years, but recently my father said something on the phone that hit a nerve with me. I emailed him a very long email about everything I was feeling and going through and it has helped. He thanked me for really explaining, and it took me over 3 years to do that.

I wish that I had worn a marshmallow helmet every day and had realized that when I was starting to feel better was not the time to start doing stuff again.:(

I wish that I had known that it was OK for me to feel awful.;)

This is all still true a year latter when I now have 10 concussions and am about to graduate if I can make it through the next 3 weeks.

If you wear glasses , ask your optometrist about Velvatint (please correct me if I am wrong in the exact name, memory issues as we know!) Basically they are a lightly rosy tinted lens which actually reduces the glare of flourescent lights! Granted, this does nothing for the sun, nor for those who do not need spectacles, but they have helped me immensely andi no longer have to wear my sunglasses indoors! (and the tint itself is not obvious at all to those looking at you)

What does a neuropsychologist do? I'm being sent to see one if the workman's comp will pay for it.




QUOTE=NourishYourNoggin;834992]HI:
I'm the mom of a 14yr old teenage boy who has been recovering from PCS for 1 1/2 yrs. As a MTBI Literate Integrative Health & Nutrition Coach as well - I can share with you that what you choose to eat can profoundly impact your brain and body's ability to heal.

We are fortunate to have Dr. Diane Stoler as our Neuropsychologist (she wrote the great book "Coping with Mild Traumatic Brain Injury") and she puts all of her TBI clients on a particular diet.

Yes, the body uses an amazing amount of energy keeping it together as you are trying to heal. Good quality protein is very important for your brain and - you might not want to hear it - but eating sugar can reduce your immune system's ability to fight infection by up to 75%. Vitamin C and glucose are chemically constructed the same and will compete to get into a cell in your body. (google sugar and the immune system and you may be very surprised)
The sugar in the juice that you are taking could be counteracting the good that you are trying to achieve. Better to take a vitamin C supplement.
Also, my son takes 3mg of Melatonin and magnesium to help naturally with sleep at night.
Hope this info helps.

Warmly,
Tina S
Nourish Your Noggin[/QUOTE]

Villagecrest,

A Neuro Psychologist will often conduct a Neuro Psychological Assessment (NPA). An NPA is a battery of tests used to measure cognitive, memory, motor and processing skills. They can be very good if done by a good NP. Some NP's are biased against prolonged concussion symptoms.

You should talk with a WC attorney who understands concussion/mTBI to get some help with the issues of an NPA. I hope you have acces to a good WC attorney.

My best to you.

:)
 

It is very scary- your not alone. Your not a hypochondriac.

I fell face first and hit my forehead on the concrete last Friday at the local gas station! 12 stiches, bruises, scrapes, lots of swelling per my forehead, eyes, cheeks!! Black eyes for three days! However I was really thinking I would heal up and life would be fine. CT SCAN was clear. However I went back to the Dr of Friday let her know how dizzy I am. I am not sure but maybe mild confussion, heavy head, then light head. Noise is awful! Can bring myself to do my morning walk in the heat... just seems like I can barely walk around the house! She diagnosed me with Post Concussion Syndrome! UGH! What the heck is that?

Your post has given me some good insight! It may not go away in a couple weeks! Be positive! Thank YOU!